Tuesday, May 31, 2011


Every day Levi gets home from school, runs to the kitchen to look for a snack and asks, "Where's Allegra?"

As he held her yesterday after school Levi told me, "Mom, I'm glad Allegra got to live. "

I replied, "Me too buddy,"

"I wish she could stay," he said.

Unable to respond, I just rubbed his back.

Monday, May 30, 2011


Preemie-sized clothing remains too big for Allegra.  Thankfully, Cairo's doll clothing is not.  See below.

Oops!  Tiger costume is a wee bit small.

Sunday, May 29, 2011


This morning our friend Kimberly Naranjo, who has regularly photographed our family since moving to Raleigh, came to shoot some family pictures.  While we don't have the results of that session yet, most of the professional-looking photos on this blog were taken by her.  In addition to running a professional photography business, Kimberly also generously shares her talents by taking pictures of families where a parent or child is terminally ill.  She calls this "The Remember My Love Project".

You can read about her project and look at more of her beautiful work here....


And if you're wondering, Allegra is doing well today.  The jaundice is gone and her skin color has returned to a healthy pink although she does have a gunky right eye.  The episodes of apnea are becoming more infrequent thereby reducing her time spent on oxygen.  She likes to sleep, cries only when hungry and is rarely put down.  She is a sweet, quiet baby.

In the picture above, the stuffed animals were picked out by siblings Cairo, Levi and Cameron to give to Allegra in the hospital.  Not shown is the pink pacifier Allegra's littlest brother Klein chose for her.

Saturday, May 28, 2011

Day 9

She's still here.  And she snores.

Friday, May 27, 2011


Dear Baby Allegra:

You were born one week ago today.  Unquestionably, you are the best four pounds I have ever gained.  And one day you will be the hardest four pounds I have to lose.

Your Mom

    Thursday, May 26, 2011


    From left to right: Softball.  Baby Allegra.  Baseball.

    Day 7

    Birds are chirping outside.  The sky is turning blue.  Small feet are padding around upstairs.  And I have a little bundle of baby resting on my lap.

    It's Day 7 with Allegra.

    Seven days have given her time to figure out a few things.  She likes to wiggle her arm free from the burrito wrap and tuck it under her chin when she's relaxed.  She cries when she's hungry then finds her fists to suck.  She makes sweet gurgling baby noises.  And she sleeps with her head on my chest.

    For a girl with only half of a working heart, Allegra's efforts to stick around are certainly whole-hearted.

    Tuesday, May 24, 2011


    Here's video footage from the day Allegra arrived. Special thanks to our dear friend Lori Collier who jumped out of bed at 2:30AM to drive to Chapel Hill and capture these precious moments.

    Minute 0:30 Ali says to Mitch, "I can't believe she's alive."

    Minute 3:09 Mitch says to Klein, "She waited just for you."


    Before Allegra was born, and in an effort to make this experience seem easier, I tried to convince myself I wouldn't be able to love Allegra as much as her siblings because of her imperfections.  Yet again, so foolish of me.  I love her small head covered in dark hair, her eyes that will do no more than crack open, her round pink lips that open in a perfect circle, her fingers that bend over each other, her long skinny arms, her twisted legs and rounded feet...it's all perfection.  All of us fall more in love with her everyday.

    Mitch and I take turns spending time with her and meeting the needs of the other kids.  Mitch loves to lay down and cradle her in the crook of his arm.  He is the quintessential doting father--oohing and awing over every yawn and gurgle.

    Cairo lays on our bed and stares at her as she chats away to us about her life.  Yesterday at school her teacher allowed her to pull up the blog on the smartboard (large classroom computer screen) and show pictures of Allegra to her class.  She is always willing to sit and hold Allegra if we need to do something.

    At 4 a.m. this morning, Levi walked into our room to use the bathroom.  When he finished, he came over to where I was feeding Allegra, hopped up onto the arm of the chair and said, "I'm glad Allegra was born.  I know what will make her open her eyes...", then he bent over to kiss her head causing Allegra to raise her right brow and peek out for a look.  "I guess I have magic kisses," Levi said before kissing me then heading back to bed.

    Cameron is content sitting on the couch holding Allegra and kissing her every time he sees her.  At the hospital, when Mitch told the kids we needed to give Allegra a special blessing, Cameron walked over to her, bowed his head and said a small prayer for her.  Last night he introduced his friend Ben to Allegra, telling him, "Ben, you can kiss her.  She likes kisses."

    Klein wakes up in the morning and runs into our bedroom looking for "Baby Wegwa".  Then he climbs onto our bed to kiss her.  Whenever he sees Allegra we must lower her in response to his request to "Tiss her head!"  Sometimes he talks to her in a high-pitched voice, telling her to "Say goo-goo ga-ga!"  She hasn't responded yet but he keeps trying.

    She is adored.

    Monday, May 23, 2011


    Thank you to everyone who came to meet Allegra last night.  Unfortunately, we completely forgot to take pictures.  We are so happy to share our sweet baby with those who have thoughtfully supported us in so many ways.  We are truly and totally overwhelmed by everyone's love, whether near or far.


    Monday, May 23
    From 6 to 7 pm
    At the Pulley Home

    Adults and children are invited. No gifts please.

    Sorry, no refreshments will be served.  However, you are encouraged to go out for ice cream after stopping by.

    Day 4

    Another night and Allegra continues to fight. Last night the power went out and we had a few tense moments as Allegra's breathing tube was reconnected to the backup tank. Fortunately, we'd practiced this thereby making the real thing much easier.

    Since birth Allegra has been fed through a syringe with most of the formula spilling out of her mouth. This morning she showed off some new swallowing skills. Way to go kid!

    Sunday, May 22, 2011

    Day 3

    Grateful she's still here.
    Periods of breathlessness are increasing in length and frequency.
    A particularly long pause last night felt like she was leaving for good.
    Moments later her cheeks returned to a rosy red color and she peeked open one of her eyes.
    I think she's preparing us.

    Saturday, May 21, 2011


    After checking in to the hospital on Thursday night for an induction, my body instead went into labor on its own and Allegra came into the world on Friday morning just before 5.  Stunned by the speediness of her arrival, I looked down at her on my chest, noticed her mouth slightly moving, and wondered if she was alive.  Usually after delivery I'm listening for the announcement on gender, this time I waited to learn if she was breathing. Neither the midwife nor the nurse confirmed.  So Mitch and I watched her.  Slowly she moved.  And again.  With relief we realized she made it.  Such a good girl.  Allegra met her excited siblings and grandparents an hour later and was showered with hugs, kisses and an unquestioning acceptance of her physical differences.

    Allegra has the full pink mouth and dark hair that I dreamed.  She looks perfectly normal burrito'd in a blanket with a little hat on her head. When unwrapped though she has visible defects resulting from the Trisomy 18 including misshapen ears, extra folds of skin at the back of her neck, curled fingers (neither the thumb nor the first finger can bend), and a club foot.  Regardless of her diagnosis and the resulting anomalies, she is perfect and we adore her.

    After a restless night of feedings and fussiness, I woke up this morning with a tiny snoring baby sharing my pillow. Perfection.


    Closing in on 36 hours...

    A few anxious oxygen moments but Allegra is one tough girl.
    We're enjoying every minute!

    Friday, May 20, 2011


    Here's our beauty!
    May 20, 2011 - 5am
    4lbs, 4oz / 14.1 inches

    Ali did a stellar job...au naturel. So well in fact, that they released her and Allegra to come home at 11am. Hospice visited our house at 1pm and our oxygen tanks just arrived. Now we just enjoy every minute we get with her!


    Our precious Allegra has arrived. Our beautiful girl was born this morning at 5am. Mom and baby are doing well. We're savoring every second with her.

    More to come...

    Thursday, May 19, 2011


    Dear Baby Allegra,

    It's late and your mother, brothers and sister are upstairs sleeping. I've been thinking about you all day. Even though your due date just passed, you've decided to stay put. I think that's smart...don't rush things. The greatest moments in life are often the anticipation preceding an event. Take your time.


    Wednesday, May 18, 2011


    Dear Baby Allegra:

    You are 40 weeks along today.  I've loved every minute of you growing inside me, but daily mourn the fact we won't have you for long.  My wondering if I want this pregnancy to end has now been replaced with excitement to meet you.  We will adore you.  I hope your little life is comfortable for however long it lasts.

    Your Mom

    Friday, May 13, 2011


    Visited the midwife today (at 39 weeks)...

    Baby's heartbeat: 140s (normal)
    Baby's position: Head down & low (baby remains small and amniotic fluid plentiful making shifting still possible)
    Fundal (belly) measurement: 36 weeks (No change since 37 weeks)
    Midwife's size prediction: 4 lb. baby

    When she comes, we'll post regular updates on this blog.

    Wednesday, May 11, 2011


    Dear Baby Allegra:

    You're 39 weeks along today.  I dreamt of you.  Despite all the talk of mental and physical abnormalities, you had the full pink lips of my other babies.  You were so still in my arms.

    Your Mom

    Tuesday, May 10, 2011


    On the way home from preschool yesterday Cameron asked,

    "Mommy, can I please eat lunch outside with some of those red chips [Doritos] and look at clouds?  I'm gonna try to find a cloud that looks like Baby Allegra."

    Friday, May 6, 2011


    Visited the midwife today...

    Baby's heartbeat: 140s (normal)
    Baby's position: Head down & low (baby remains small and amniotic fluid plentiful making shifting still possible)
    Fundal (belly) measurement: Forgot to measure

    We're hopeful Baby Allegra will come on her own.  If she doesn't though, we've scheduled an induction after her due date.

    When she comes, we'll post regular updates on this blog.

    Wednesday, May 4, 2011


    Dear Baby Allegra:

    You're 38 weeks along today.

    Your siblings love to run and play.  Cairo easily swings across the monkey bars.  Levi can dance like Michael Jackson.  Cameron loves swatting balls with a tennis racquet.  And Klein wants to ride his motorcycle all day.

    I wish I could've given you a healthy body too.

    Your Mom

    Monday, May 2, 2011


    Tonight while waiting for Levi to finish soccer practice, Cairo kicked a ball around with Cameron and Klein.  At one point Klein fell and needed comfort.  I watched as Cairo carried her little brother up the hill, set him on my lap, pulled out the wet wipes and then placed them on a small scrape on Klein's leg.  She lovingly cares for her brothers, but has mentioned she's tired of being the only sister in the family.

    We all adore Cairo.  She works to be good and is inherently kind and sensitive to others' needs.  Like last Friday she was annoyed news coverage focused on the royal wedding instead of the tornado damage in Alabama.  She reads to her brothers, tackles homework without complaint, responds immediately to anyone's request for help, likes multiple good night kisses, and often leaves sweet notes on our nightstands.

    I wonder if Allegra would be the same.

    Sunday, May 1, 2011


    Included in Levi's dinner prayer...

    "Please bless Baby Allegra that she'll be okay through this difficult time."